People wanted information for various reasons. These included wanting to understand more about their condition and treatment options, where to go for treatment, what they were putting their bodies through and what their chances of success were. Their information needs often changed as treatment progressed – for example research into IUI being replaced by IVF, or weighing up options when deciding whether to continue or stop treatment. People were also keen to hear from other couples about what it was like to go through treatments, and how other people coped. As Fiona said, “I actually think we didn’t know enough”.

People gathered information from a variety of sources – clinics, support groups, the Human Fertilisation Embryology Authority and NHS, books, leaflets, television and radio. Sandra said she found out a lot of information from books. She also joined Infertility Network UK (see Resources) and found their quarterly magazine very helpful, “Because it tells you about the latest research”. Clara felt there was lots of information in the papers and media, but you needed to treat it sceptically, “In the newspaper you might just get the sort of glamorous bits or the awful bits. The media is very black and white in that way.” Susan had her treatment a decade ago and relied on what her doctors told her.

Susan is a teacher, married with one grown up daughter. Ethnic background' White British.

When you came back to try to have another baby. Where did you try to get information at that point? I mean obviously the internet was barely around at that stage.

That is right. I was completely reliant on what the consultant told me, which was very little. Or consultants and I mean there were no books that I was aware of. I came across the HFEA in some of their booklets on storage of gametes and you know, on egg donation and to do with the consent and the rights of the child and all that. I mean obviously we read all that. But it is not actually about the tests and you know what tests. I mean I know now that a hysterosalpingography probably would have been extremely useful to do. But I didn’t know that there was such a thing then and it wasn’t mentioned. So you know, it is I think there are huge issues around making information available to patients and allowing them to have a part in… in the actual tests and to feel that they have an important role to play. Otherwise you know you feel as though everything has been done to you all the time and other people are making all the decisions and you know you are just the … [laughs] at the end of the line really. Which is sad.

Nearly everyone we talked to used the Internet. It has dramatically changed how people find information. As Nigel said, “The Internet has been such an important tool. We couldn’t have done half the things we’ve done, and it’s made clinics throughout the world easily accessible.” Steve did searches on medical databases online, “Our searches probably became more sophisticated and in depth as more and more information became available.” Lulu used an American website that, “Had loads of information and, once I was able to see that and read other people’s experiences that did help.” Carol used the website Fertility Friends which she found very useful.

Saskia is a teacher. She is in a civil partnership with her lesbian partner, and they have two daughters. Ethnic background' White British.

And how did you do your research?

Internet. A lot of internet stuff and discussing with friends later on who I knew were having IVF. And one of them was as neurotic as me, and was doing loads and loads of internet research. So I think we both drove each other mad with too much information. But yes…

Did you feel that it was too much information?

I’m not sure we… I think we were just doing it for our own peace of mind, finding out, I don’t think it affected the decisions that were made and I think had we had no information we probably would have gone down the same routes, but for our own peace of mind we had to be sure of the decisions that the doctors were making and that we were choosing to do were the right ones.

But that’s done like, that’s what I’m like with everything, not just to confined to any medical things or other choices. I like a lot of information.

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Profile Info

Age at interview:

36

Sex:

Female

Age at diagnosis:

30

Background:

Maggie is a writer and marketing consultant. She lives in Ireland with her husband. Ethnic background' White British.

I found the Internet a hugely useful source of information. I would, it was quite funny though because I would quite often be at work looking up these fertility websites and there’d be quite complicated drawings of the female reproductive system and I, someone would come into my office and I’d be like, quick, minimise it. So that was quite interesting, you know, for me that was a really useful, a useful source, and also sometimes a scary source. There’s a lot of information on the Internet that isn’t corroborated. You know, you, anybody can put something on the Internet. I think it’s really important to find out a, a respected source of information on the Internet. You can terrify yourself looking at various different websites. You can self-diagnose as well, which I think can potentially be quite a dangerous thing to do. And so I think my advice would be, “Look at, for a decent website with information that you can trust.”

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Age at interview:

46

Sex:

Female

Age at diagnosis:

29

Background:

Liz is a midwife. She is divorced and has one son. Ethnic background' White British.

But actually information, you do you want information all the time. You want more information. As much information as you can possible get and as you rightly said there wasn’t much, I wasn’t near a computer much, you know and access to a computer. So those newsletters actually that came from the originating fertility unit were very good, very good, very informative and then they had access to support and counselling if you wanted that. I didn’t actually take that up to be honest, because I felt I got of support from my family and friends, but you do and afterwards the same with newsletters and things, were very good. I just liked that. I liked that aspect of it.

While the Internet was described as an invaluable tool, several people also raised concerns about websites that gave false information, or false hope, or could be scary. Christine, herself a doctor, said, “There is a lot of false stuff out there as well…. I tell (my patients) not to Google things because I think it can be quite dangerous”. Clare read widely but took the information she found on the Internet with a pinch of salt. George found it hard to find information about male infertility and treatments, in particular sperm aspiration. He also said that some of the sites he read caused, “A lot of worry for me.”

Clare is married and worked as a mediation officer. Ethnic Background' White British.

I do use the Internet and I do search for different things to do with miscarriage and infertility. But I find it quite overwhelming, the amount of information you can often find there. And also the level of medical detail, that perhaps as someone who’s a layperson, who doesn’t, who’s not a doctor, I can’t always understand what they’re saying. And sometimes it can actually I think cause more anxiety than it actually allays. For example I’ve got a bicornuate uterus, which means that it’s slightly heart-shaped, and that can be a cause of miscarriage. But if you go and have a look on the Internet, it basically, you know, the, the scare stories about it are just manifold. And you could end up convincing yourself that if you’ve got a bicornuate uterus you’re never ever going to be able to carry a baby to term. Which isn’t the case at all. So I think that, I do look on the Internet and I do research on the Internet, but I always take it with a little bit of a pinch of salt. But if there’s anything that I find particularly interesting or particularly concerning, I’ll either go on to the forum and post on there and say, “Has anyone read this? And what do you think of it?” or I’ll print it off and take it to my consultant and say, you know, “I’ve read this. Do you think there’s any truth in it?” And I know doctors and consultants absolutely hate it when people go in with Internet printouts. Because the last time I went to see my GP with something I printed out from the Internet I could see her visibly sort of going uh. Because you just, they must get so sick of it, everyone diagnosing their own problems from things they’ve printed out on the Internet. But I just think that it’s often better to just have that second check with somebody who’s medically trained and medically qualified, rather than sending yourself into a complete spin because you’ve read something on the Internet that tells you that because you’ve got x, y and z you’re never going to be able to have children. Because sometimes it can be written from a completely different angle that you haven’t quite picked up on, because it’s a medically researched document or something and you haven’t picked up on actually that’s a research project about someone who’s got a condition that you don’t have. So I think, yes, the Internet is an enormous source of information, but I think it has to be used very carefully. Because otherwise it can just make you even more anxious than the whole thing does anyway.

So in terms of the internet you used it sort of to find information and also just as a sort of way of finding people to talk to about it, is that right?

Yes, absolutely. It was finding information, firstly about the condition. About the various different things that were wrong with us. Then researching clinics, so especially, it was especially helpful when we came to make our decision to go overseas, because how on earth would you find out, if you didn’t have the internet, how on earth would you get unbiased views about clinics in Spain for example, or in the Ukraine or wherever you choose to go. Whereas there are communities on line now, with so many people who are able to give you unbiased, very practical advice about it. And also the support when you are doing it as well. So I think also the internet probably helped me because of the sort of forums and chat room type things that I got involved in. It did mean that I probably wasn’t obsessing about quite as much to my husband as I would have been, had I not had those outlets as well.

Support

It is not unusual for people going through infertility treatment to feel rather isolated. Some had chosen to keep their treatment secret (see ‘To tell or not to tell’). Others who had told family, friends or work colleagues could still feel isolated if they thought that no one could really understand what they were going through. Catherine said, “I think you have to accept that people don’t really understand what you are going through, and people do sometimes say things that seem to you so crass and awful. But it’s just that they don’t understand”. Anne felt, “There is literally no support whatever for anybody” and Martha felt “completely unsupported”.

But others did find support from a variety of sources. People most often received their strongest support from their partners and family (see ‘Relationships with family and friends’, and ‘Impact on relationships’). Couples often went through infertility together as a tight knit unit and parents and siblings were often very supportive, offering a shoulder to cry on, encouragement, and showing an ongoing interest in their treatment.

Being able to access other people’s experiences of infertility and treatment, whatever the route, was often very valuable. Fiona wished she had known more earlier on about the emotional rigors of treatment. Mike was grateful to have been able to chat to colleagues who had been through treatment.

Sandra found it helpful to read about how other people had reacted. “It might be a sentence about somebody that feels... she couldn’t go to a christening and felt perhaps she was being selfish because it was a friend and she felt she should go. But she didn’t really know how she could get through the day. And you think, ‘Oh yes, actually I felt like that at one stage but I thought I needed to pull myself together’. But to read that someone else did, it just helped I think.”

Brian wished he and his wife had been able to talk to more people about their treatment – “In hindsight we really did need to be around people in the same situation.”

Belinda had found support online and locally. She valued being able to talk to people who were in the same situation at the same time.

Belinda is an intensive care nurse, living with her husband. Ethnic background' White British.

I think sometimes the online support is good because there is always somebody who you can talk to generally and you get to meet a lot more people. Whereas like locally there aren’t that many people who are on this site. There is only just like a few of us like within Yorkshire. But like a few of us do meet up and that is quite nice. It is a good excuse to have lunch as well [laughs]. But it is nice having that personal support as well. But it is also quite … but we are not always necessarily in the same situation. So sometimes it can be quite hard to understand what somebody else is going through when you are not in exactly the same place. Whereas at least on the site then there are people in the same situation as you. So even though they might live on the other side of the country then you can still have that contact with them. Which I have found really, really good.

Support Groups

Some people made contact with support groups and went to meetings or talked on the phone or over the Internet. Some found them really helpful. Sally said that going to a support group, “Certainly helped put it in perspective… people were just having a much tougher time of it emotionally and financially”. Martin described their involvement in support groups as “therapy” for them – “the more you talk through it the more sense you can make of it… the more you can get your head around it… and that helps amazingly.”

Carol is a marketing manager living with her husband. Ethic background' White British.

Well everybody that is a member of the Friends has gone through treatment and at some stage I know they will have thought exactly what I am thinking and they will have been where I have been. If I am upset, they have been there, they can understand and empathise. Also it is a question of coming out with a black sense of humour and coping methods to deal with it. Sometimes you have to develop a sick sense of humour to get round it. If not I wouldn’t get out of bed. I would sit and cry. Whereas we can all say funny stories that have happened as to the IVF treatment, and what went wrong, and one main comment that everybody comes out with when you have your eggs harvested and we all asked our partners straight away who put our knickers on for us. And it is such a strange question but it is a natural fear, you don’t like to feel vulnerable. The fact that we have actually been naked from the lower half for about 30 minutes and not caring about who is looking at that. Oh no, that is not, it is the dignity, who has put my knickers on for me? Am I okay now to face the public? [Laughs]. So yes. IVF or Friends of IVF or any groups like that it is very important and to look to somebody in the eyes and know that they have been where you are. It is very important.

And that has been a real help to you has it?

Yes. It has. And also it has meant that I have been, felt less helpless about my own situation in that I can help other people going through it and tell them what to expect, and reassure them, and allay their fears that no, it is not the end of the world. Yes, it does hurt a little bit, but it is worth it in the end if your dreams come true. Obviously if it doesn’t then there is always another go and the doctors learn a lot more from cycle to cycle as to how the body reacts and what happens. So it is well worth trying.

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Age at interview:

45

Sex:

Female

Background:

Catherine is a writer, married with two children. Ethnic background' White British.

But I did, at first I was really really reluctant to join any kind of support group. And I think it was partly because it was kind of, it kind of meant admitting that it was a problem. And I remember when I went to the hospital one of the doctors saying to me something about a support group. And I said, “Oh, no, I don’t want to join a support group.” And I was really really adamant about it. And I said, she said, “Why?” And I kind of explained that I thought it would be sort of admitting it was more of a problem, and that it wouldn’t help me cope, and I was coping fine by myself, and burst into tears. And she said, “Well, I don’t think you’re really coping, are you?” I said, “No, I’m not.” And I did actually in the end, I remember I had to really pluck up my courage the first time I rang the Infertility Support Network. And it was like you were ringing about some really, I don’t know, admitting you had some really awful thing. It really felt like that. And I remember my voice was really shaking and I was really really anxious. And they were just really lovely and really supportive and sympathetic. “Well, we’ll send you all our information.” And actually it was a real help. And we went to, we didn’t go to lots of support group meetings, but we went to a few and it made such a difference. It was just amazing to be in a room full of people who you had absolutely nothing in common with really apart from this one thing, but they all understood. And you knew that no one was going to say to you, “Oh, so do you have children?” and, “When are you going to get round to it?” And, you know, we could even laugh about some of the sort of ridiculously awful things that had happened to us. And it was just a, fantastic. Actually it was really fantastic. And I was so glad that we did it. And we didn’t go that often. But you knew when you needed to that that kind of network was there to tap into. And I think that was actually one of the most valuable things that we did, because, you know, at the time we didn’t know anyone else who was going through it. And it was just brilliant. And then later on as we got further down the process, a sort of friend of a friend of a friend was actually having fertility problems and started on the whole testing thing at the same time, and we became just really really close friends because of that. And it was so helpful to have her there and to be able to talk to her and always know that she understood. And, and, you know, we could go off and laugh about ridiculous things together about it and, you know, talk about how awful other people were not understanding and how unsympathetic they were. And actually it was a real help just to have someone else who was there and who kind of had the same things. But then it was quite difficult, because I got pregnant before she did. And I knew exactly how she felt about it. I knew how she was putting on that smile and going, “Oh, that’s fantastic.” And I knew that me being pregnant would be worse than anyone else being pregnant for her. And she was brilliant and we did stay friends. And then she got pregnant in the end as well.

Liz set up her own infertility support group after her ICSI treatment. She said it was really valuable, not only for the practical advice, but also for being able to share experiences with others, “I felt like that.” Olivia and Walter were involved in setting up a support group for donor conception, they felt very alone at the beginning (Donor Conception Network). Maggie now volunteers for an infertility support group.

Maggie is a writer and marketing consultant. She lives in Ireland with her husband. Ethnic background' White British.

I think volunteering for an infertility support group has been re-, was really really helpful for me in terms of, just about coming to terms with the whole issue. I, I think until I’d dealt with the issue and kind of got used to the idea of us not having children, I wouldn’t have been particularly useful for the support group until that point. I needed to be okay with it myself, because I think otherwise I would have been dredging up unresolved feelings in myself. When really, you know, the, the whole idea of being at the other end of a support telephone line is to be empathetic to the person that you’re speaking to, rather than saying, “Oh, my God, it was exactly the same for me.” That really isn’t appropriate. It’s, you’re kind of using your experiences and your knowledge of the feelings that you had to help that person come to the same situation that you’re into.

Of course support groups are not for everyone. Lulu found her visits to the local support group, “Really difficult. Everyone would sit there not really knowing what to say”. Tim said he didn’t think it was, “Healthy, a lot of people getting together like that”. Fiona felt she just couldn’t join an infertility support group, “It wasn’t right for me, because it was so painful for me”. Now she has adopted she has joined an adoption support group. Anne was unable to find a local support group and felt very alone.

The Internet has radically changed the support (and information) that people are able to access when they are have infertility. Several people we spoke to were very positive about the support networks they had been able to access via online fertility sites and forums. These had opened up new communities of support for them, which they found reassuring, and helped to make them realise that they were not alone and that their feelings were not unusual. George, who had been waiting years for an IVF appointment with his wife, found that going online helped with the waiting and the isolation. Maggie said, “I did use forums and I did find those really, really helpful. I would quite often just look and see what other people were talking about. And I think that, especially when people were letting off steam, that made me realise that I wasn’t the only person who was feeling quite negative thoughts towards tactless friends and family members”.

Clare is married and worked as a mediation officer. Ethnic Background' White British.

Tell me a little bit about the support that you’ve had from the Infertility Network.

It’s been absolutely fantastic. I found, I joined the Network about a year and a half after we started trying, and started posting maybe a year or so after that in the, the forums where there’s lots of different threads and things. If you’ve been into a Internet forum, it’s the very standard sort of forums. And you can just go on there and you can talk about absolutely any aspect of infertility at all. Whether it be a detailed question on how you should feel during your, your stimming drugs or how many follicles is a good number of follicles to get during IVF or, you know, how to cope with pregnant friends. What happens when you take Clomid? Or even going right back to the beginning, you know, what sort of initial investigations to expect at the fertility clinic. When I first joined I was still on the Clomid. And I was absolutely adamant I was never going to have IVF, because I had my Clomid, my magic tablet and I was going to be pregnant by Christmas. So why would I need IVF? And I would go on there and I would see all these women talking this very strange language about IVF, about EC and ET and down regging and stimming. And I had no idea what they were talking about. And I had so much admiration for them and what they were going through. And little did I know that only three months later I’d be there as well. And when I found out that I had to have IVF I was absolutely terrified. And as I said before I had nobody I knew who knew anything about IVF at all. And you can read it in books and things, but it’s not the same. And I was able to go on the forum and post every step of the way and say, you know, “I’m feeling like this today. Is this normal?” And people would come back and say, “Yes, of course it’s normal. You know, you’re feeling really emotional because you’re down regging. You’re crying every second. That’s absolutely normal. I felt exactly the same.” Or you’d post and you’d say, “Oh, I’m not feeling very bloated. I’m, you know, I’m stimming and everyone’s saying I should be, feel bloated.” And then a couple of other women would come back, “Oh, I didn’t feel bloated at all during stimming.” And you suddenly feel normal. You feel accepted. You can go on the forum and say, you know, “I’ve just walked past a pregnant woman in Sainsbury’s and I found myself standing in the, the fruit and veg aisle bawling my eyes out.” And everyone else would think, “Oh, that’s a bit of an overreaction.” The girls in the forum were just like, “No, I’m with you. I’ve done that, I’ve been there. I know exactly how you feel.” Or there’ll be an advert on the TV. I think there was an advert for the, a car, I can’t remember which car it was. Its strapline was something like, “There’s no greater adventure than having children.” And we were all posting on the forum that night, “Oh, isn’t that advert irritating. It’s so smug.” And again everybody understands how you feel. There’s no, you’re not made to feel like you’re overreacting, like you’re making a big fuss about nothing. There’s no kind of like, “Oh, get over it and move on” sort of impression. Everyone understands where you’re coming from, where you’re going to. And there will always be someone there who has had your particular problem or your particular diagnosis or your particular issue with the doctor or can gui-, you know, point you in the right direction with the right vitamin supplements to take. Or do you think your dose of Menopur is too high or you’re on too much Buserelin? Or do you think I should ask my doctor to do x, y, z? And they will come on and give you advice. The, the miscarriages again, people will say, you know, “Have you considered this? Have you tried those? Have you thought about doing this? Have you asked your consultant this?” And there is just so much information and advice on there. Just, and that’s just from the, the other women who post. That’s not even from the charity itself, which in itself is a wealth of information and advice. So it’s an absolute lifeline, it really is. It’s fantastic.

So in terms of the internet you used it sort of to find information and also just as a sort of way of finding people to talk to about it, is that right?

Yes, absolutely. It was finding information, firstly about the condition. About the various different things that were wrong with us. Then researching clinics, so especially, it was especially helpful when we came to make our decision to go overseas, because how on earth would you find out, if you didn’t have the internet, how on earth would you get unbiased views about clinics in Spain for example, or in the Ukraine or wherever you choose to go. Whereas there are communities on line now, with so many people who are able to give you unbiased, very practical advice about it. And also the support when you are doing it as well. So I think also the internet probably helped me because of the sort of forums and chat room type things that I got involved in. It did mean that I probably wasn’t obsessing about quite as much to my husband as I would have been, had I not had those outlets as well.

The internet, has been such, such an important tool. We couldn’t have done half the things we’ve done, and it’s made clinics throughout the world, easily accessible to you. Both through communication, research and talking to other people who have been through it, as a support forum it has been absolutely second to none .And you know, people we’ve met through it and other people in the same situation as ourselves and those people you become your own self help group because you meet people and a community forms. And there are so many different facilities now, INUK. There is one we are heavily involved in and that’s fantastic but there’s loads of other boards as well which focus slightly on different angles, depending exactly what you’re looking for.

And anybody I meet who is going through this, I mean like people at work, the first thing I do, is you have got to get on to these sites because the access whether its emotional support or facts and figures, the information’s there. And if you are looking at a particular clinic, there will be a board specifically for that clinic, the people who are going there can tell you what, not some brochure or website from the clinic but real people, just like you, that have been there that will tell you what their experience is like. And lots of them. So you can really get this firsthand experience. And without that how can you make these judgements? You know, we wouldn’t have even known of the existence of the clinic we went to without that. But it is no different when you are dealing with them to the clinic in the UK, which was an email you could correspond just as easily. And so the internet, has opened a massive amount of opportunities and doors for people.

And but it is not just about fact finding, I mean we tend to be very informed and anything we go along to we tend to know, half the time, more than the people teaching, whether it was adoption, whether its ICSI or blastocyst or, we need to be informed, we need to know. So we tend to do a great deal of research and that is one, an element that is great but the most important one is the emotional support. But guys don’t use it.

Have you used it?

I’ve registered [laughs]. The reason I will, I would use it, but there is nobody on there at the moment on the guy’s forum, so I am actually to registered to go on and I actually get updates and find if there is anybody on, and there is nobody using it. There is no, the guy’s community just doesn’t exist. So I’m a helpliner. I do take phone calls from people if they want to talk about it. But on the internet guys tend not to use the support structure. Which is interesting. I think it is very indicative of the fact that the guys still don’t really talk about it. We tend to bottle up more. They are perhaps more embarrassed about it. Which is a shame.

However, some men we spoke to found that although they would have liked to use the Internet to find support from other men, they found that most websites were used by women only. “The guy’s community just doesn’t exist.”